1. Speech and Language Therapy in Dementia and Palliative Care
Aideen Lawlor
SLT Manager
Dublin North City and County- North West Dublin and St. Mary’s hospital Phoenix Park

2. Content of talk
How dementia impacts on the communication skills of people with dementia
What strategies and tools can help when communicating with people with dementia
The role of the Speech and Language Therapist in dementia and palliative care
Managing swallowing problems for people with dementia including ethical decisions around swallowing problems

3. Communication and Ageing
Hearing and visual difficulties (Presbyacusis)
35% of UK over 65 pop have a hearing loss sufficient to affect daily living
40% of people prescribed a hearing aid do not use it  
Changes in attention and memory
Motor slowing (facial and respiratory musculature)
Dentition and saliva production
Drug side effects
Reduced communication network

4. Communication in older people
Difficulty processing speech structures that rely on working memory, this can include recalling recent events, particularly involving time and place.
This may also bias the most recently presented choice.
Priming effects may have more impact on older person so providing choice of answers may influence responses.
Repetition of information may result in that information being viewed more favourably.

5. Tips for enhancing communication
Normal prosody (intonation, timing and stress) assist rapid detection of linguistic structure. Exaggerated prosody should be avoided.
Pausing at natural processing points (sentences/clauses) allows additional time for speech processing.

6. Language characteristics of Alzheimer’s Disease
In Alzheimer’s Disease at mild-moderate stage, semantic system is inaccessible rather than degraded
Inconsistencies appear-
output versus input tasks
Picture versus word recognition tasks
Generative naming across time- modality differences- written versus verbal comprehension

7. Late stages of Alzheimer’s Disease
Turn taking preserved
Some preservation of appropriate use of language in every day context, greetings, mealtimes
Listeners can facilitate ‘conversational’ exchanges

8. Emerging view of dementia
Different disease patterns, Individual variation--Don’t assume input and output the same
Drug therapy arresting the decline
Preservation of underlying knowledge
Person centred approach to dementia
Interpersonal communication skills still prevalent at advanced stages of dementia

9. How we communicate?
Tone
Body Language
Words we say

10. The person with Dementia
words
Tone
Body Language

11. The person with Dementia
“The Person with dementia “sometimes seem to have a heightened awareness of body language, and often their main meanings may be conveyed nonverbally. In the case of those who are very severely impaired in cognition, it seems probable that the words and the sentences are at times more of an accompaniment or adornment than the vehicle for carrying the significant message.”
Kitwood 2000

12. Model for intervention
Environment
Individual needs
remaining skills
Focus on

13. Role of SLT with dementia and communication
Early: Convey information for specific circumstances
Mid: Increase reliance on printed material
Later: Teach communication partners to offer basic choices
Activity and engagement materials such as life stories

14. Tools to aid communication
Picture/text based communication aids, notebooks, maps, objects
iPad and other high tech tools
Use photos to develop ‘little stories’ or themes to develop a life story book

15. Communication Strategies
Love it Ok Hate it
For example:
Question - Would you like the priest to come
and visit you?
Would you like that to happen now?

16. Example of talking board
I don’t watch it
I like it
Christmas TV
Talk Shows
Crime
Soaps
Funny
Sound of Music
Late Late Show
Quincy
Coronation Street
Interesting
Gone With The Wind
Parkinson
Murder She Wrote
Emmerdale
Exciting
Late Late Toy Show
Afternoon Show
Midsummer Murders
Eastenders
Boring
White Christmas
Richard & Judy
Touch of Frost
Fair City
Silly I
I watch it
I don’t like it

18. Eating and drinking in the older person
malnourishment in the older patient
slower swallow
reduced isometric tongue pressure
reduced smell and tactile sensitivity
altered dentition
reduced taste acuity
accurate diagnosis of swallow impairment is essential

19. Eating and drinking problems in dementia
Visual agnosia
Distractibility
Eating apraxia
Tactile agnosia for food
Apraxia of swallow
Delayed pharyngeal swallow
Impaired pharyngeal swallow

20. Management of swallowing disorders in dementia
Manipulation of surroundings
Compensatory strategies
More frequent, smaller meals

21. Palliative care and dementia
Palliative care should not only be considered as having a role at end-of-life, but that it starts from point of diagnosis through the journey of the illness, to end-of-life and bereavement support for family members.
FINAL.pdf?ext=.pdf

22. Planning Palliative Care in Dementia
People with dementia receive less pain relief and fewer medical services at end of life
Decisions around end of life care often occur as a result of a medical crisis
Advance care planning discussion can reduce unnecessary treatments and admissions to hospital at the end of life.

23. Key outcomes from Scotland’s National Dementia Strategy
More people with dementia and their families and carers being involved as equal partners in care throughout the journey of the illness
Better respect and promotion of rights in all setting, together with improved compliance with the legal requirements in respect of treatment
People with dementia in hospitals or other institutional settings always being treated with dignity and respect

24. SLT in dementia and palliative care
Professional Carers will never fully understand the light and shade, the hope and despair, and the frustration and joy of each family member’s relationship with a person who has dementia.
The best that they can do is to develop, in partnership with families, a mutually agreed plan that includes the very best physical care, thoughtful and sensitive social support and emotional and spiritual space for each unique passing.
Hudson (2003)

25. Barriers to palliative care for people with dementia
Dementia not always seen as a life limiting illness
Communication around preference and wishes often left too late
Dementia can cause death but it is not generally recorded as the primary cause of death (O’ Shea 2008)
Difficult to identify the final phase of dementia.
Few palliative care staff have education in dementia care and dementia care staff have little education in palliative care

26. Recognising when someone is dying with(or from) dementia
where the person is non-ambulatory
has lost meaningful conversation
is dependent for most activities of daily living
weight loss of 10%
recurrent infections
multiple pressure sores
hip fracture
pneumonia in advanced
dementia
No longer meeting full nutritional requirements orally
(Gold Standard Framework UK 2006)

27. Dehydration
It is assumed that dehydration and starvation can cause a painful death.
Data from hospice caregivers indicates that dry mouth, thirst, and increased secretions in dying patients were unrelated to their level of hydration. (Slomka 2005)

28. Dehydration
“Nothing would be more tiresome than eating and drinking if [they were not] a pleasure as well as a necessity.” Voltaire
When food and fluids are not desired by dying clients, administering them does not add to client comfort.
Dehydration can aid the dying process by inducing fatigue.

29. Role of SLT in dementia and palliative care
Parallels the role of all HSCP in palliative care
Maintain and improve quality of life
Optimize pts ability to express needs and concerns
Affirm that reduced intake is due to declining clinical status-not the reverse
(J Pall Med 7(5))
Appropriate management of eating and swallowing is integral to a comprehensive End of Life approach (Smith et al 2009).
Professional Carers will never fully understand the light and shade, the hope and despair, and the frustration and joy of each family member’s relationship with a person who has dementia.
The best that they can do is to develop, in partnership with families, a mutually agreed plan that includes the very best physical care, thoughtful and sensitive social support and emotional and spiritual space for each unique passing.
Hudson (2003)

30. Role of SLT in eating and drinking problems associated with dementia and palliative care
1.Social e.g. embarrassment at mealtimes
2.Cultural e.g. Christmas dinner, birthday cake, jelly and ice cream
3.Religious e.g. taking communion
Family members e.g. fear about starvation, frustration and anger and conflict.
The focus is on minimising symptoms and maximising individual comfort.

31. Example of approach to finding out patient preference
Preparatory stage:
 Care plan review
 Medical chart review:
Communication review:
 Food and drink preferences and dislikes: review from multiple perspectives
 Staff questionnaires:
 Family questionnaires:
 Talking mats:
 Staff observation exercise:

34. Observation tools Food+Drinks preferences/ Dislikes G – Gesture;
V- Vocalisation;
FE – Facial Expression;
SL –Sleepy;
Y/N – Response to yes/ no question
C - Comment;
Req - Request

35. Observation by staff; Daily Sheet Resident _______________; MRN_____
Date: ______; Signed: ________________
Breakfast
Non-verbal G V FE SL
Verbal
Y/N C
Req
like OK
Dislike
Comment:
Lunch + Dessert
Comment
Tea
Snacks/ Treats

36. What might help with eating and drinking problems?
 New seating
 Changing position
Having more time
 Adapted cutlery
 Special cup
Using a straw
distractions
Naso-gastric tube
 PEG
 Pureed food
Timing of medication
 Extra nourishment
 Tablets in syrup form
 Avoiding difficult food
 Small meals
 Soft moist food
Thickened drinks

38. Decision making for end of life
‘stealing’ high risk foods
‘best interest decision making’ meeting
Not up to the carer/family, medical team have the ultimate say
‘ability to make decisions for yourself.’
Understand and Retain information long enough to make a decision
People have the right to make an unwise decision
weigh up all risks

40. Refusal of thickened fluids

41. Refusal of thickened fluids
Assessment of swallow function reveal X is at risk of aspiration on all consistencies particularly on large amounts of free fluids, however given current behaviours (physically declining thickened fluids), X is to take free fluids when sitting out in the chair and when alert and with close supervision of trained staff/carer (Lyndsey Collins 2013)

42. Case study- journey through dementia
3 years of decline needed Grade 3 and pureed diet to avoid LRTIs
Wouldn’t accept assistive feeding and demonstrated preference for liquids
Took grade 1 fluids (mainly milk) until end of life
Met family, discussed NPO option after severe LRTI but agreeable to remain on oral diet and fluids.

43. Case Study-journey through dementia
Admitted to residential unit at Middle stage of dementia- was non verbal
Took Full Pureed diet and grade 3 fluids for 3 years
Ate only tspns of pureed as tolerated for another 18 months
Needed to adapt mealtimes according to levels of alertness

44. Managing dysphagia in dementia- a timed snack protocol? – Boczko, 2004
2 pilot studies aimed at improving nutritional status and encouraging weight gain in patients with dysphagia and dementia
MDT team involved include SLT, Clinical nutrition, nursing staff and catering staff.
1.residents' self-feeding leads to their increased awareness of food
2. snacks based on residents' preferences (e.g., for sweet or spicy foods) are better tolerated
3.consumption of discrete, small amounts of food may serve to satisfy appetite without overloading the system

45. Method
handheld, highly spiced or sweetened snacks treated as a "medication protocol" to ensure both regular delivery and consumption, for example, pureed salami and pickle on small pieces of bread

46. Method
Group 1(6 clients)- take a snack three times a day, two hours after their main meals, as part of medication regieme
Group 2(6 clients)- Snacks recommended however not included in medication regieme

47. Findings of study
Group 1- 4 residents gained weight, 1 maintained weight and 1 lost weight
Group 2- 4 residents actually never received the snacks, 3 of those residents lost weight.

49. ‘When we are faced with tough management decisions related to end stage dementia that we should seek a Hospice consult which provides support for the family and critical documentation to address "comfort" issues. This individual will have an expected weight loss and staff need to be reassured that to "offer" food and liquid is the expectation. The definition of offer is NOT forced feeding. I view my role as a supportive professional who validates the HCA that it’s okay to attempt to feed, terminate the meal, provide oral care, report it to the charge nurse and know you’ve done the job expected. HCAs believe if they don't complete the meal with adequate intake that they’ve failed. These are random thoughts based on 13 years of dealing with the issue on a daily basis.’
Paula Leslie 2012

50. Dementia and palliative care
The last part of life may have importance out of all proportion to its length” Dame Cicely Saunders, 1990.

51. references
Abbey,J (2006) Palliative Care and Dementia. Queensland University Brisbane
Hughes, J. C. (2006) Palliative Care in Severe Dementia, Quay Books, London.
Pollens R. (2004)Role of the speech-language pathologist in palliative hospice care Journal of Palliative Medicine. 7 (5) (pp ),
Sullivan RJ. Accepting death without artificial nutrition or hydration. J Gen Intern Med 1993; 8:220–224.
Royal College of Physicians and British Society of Gastroenterology (2010) Oral feeding difficulties and dilemmas: A guide to practical care, particularly towards the end of life. London: Royal College of Physicians
Smith, H.A., Kindell J., Baldwin, R.C., Waterman, D. and Makin, A.J. (2009) Swallowing problems and dementia in acute hospital settings: practical guidance for the management of dysphagia. Clinical Medicine 2009, Vol 9, No 6: 544–8